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”Det samme, på en annen måte” : hjemmeteledialyse – etablering av en ny helsetjeneste
Sammendrag
Tema for denne masterstudie er etablering av telemedisinsk helsetjeneste til pasienter med hjemmedialyse. Hensikten med studien er å beskrive og diskutere hvilke utfordringer dialysesykepleierne kan komme til å møte ved etablering av denne tjenesten.
Studien har en kvalitativ tilnærming, og det empiriske materiale er samlet gjennom intervju av fire erfarne dialysesykepleiere. Dataanalysen følger prinsippene for kvalitativ innholdsanalyse.
For å kunne si noe om hvilke utfordringer dialysesykepleierne kan komme til å stå overfor når ny praksis skal etableres, er dagens praksis på avdeling beskrevet og diskutert i lys Elstad og Hamrans (1995) analyse av sammenhengen mellom utøvelse og organisering av arbeidet i tradisjonell klinisk praksis. Det blir vist at sykepleierne på dialyseavdelingen deler arbeidet opp i ulike faser og at de samarbeider tett med både pasienten og med hverandre igjennom hele vakta. Et slikt tett og kontinuerlig samarbeid er nødvendig for å kunne ta ansvar for pasienten på en faglig forsvarlig måte. Det blir fremhevet at fysisk nærhet mellom sykepleier og pasienten og mellom sykepleierne er en grunnleggende dimensjon i arbeidet og denne blir tatt for gitt av alle parter.
I en studie av sykepleie i et kulturgeografisk perspektiv (Malone 2003) blir rom og tid brukt som analytiske kategorier. Det blir blant annet vist at helhetlig og individuell sykepleie forutsetter tre ulike, men tett integrerte former for nærhet, nemlig fysisk nærhet, nærhet for samtale og moralsk nærhet. Fra dette perspektivet blir det vist at dialysesykepleiernes tradisjonelle arbeidsform gir stort spillerom for dialog mellom sykepleierne og pasientene. Sykepleierne blir kjent med pasientens sykdomstilstand og hverdagsliv noe som er grunnleggende for å utøve helhetlig og individuell dialysesykepleie.
Telesykepleie innebærer at den fysiske tilstedeværelse mellom sykepleier og pasient blir opphevet. Dette vil utfordre etablerte arbeidsrutiner og samarbeidsmåter. Med utgangspunkt i beskrivelsen av dialysesykepleiernes arbeid blir det diskutert hvilke utfordringer hjemmeteledialyse kan medføre for dialysesykepleierne.
Dialysesykepleiernes viktigste utfordring blir å sosialisere pasienten inn i rollen som sin egen helsearbeider. Hjemmeteledialyse vil fordre større grad av egenomsorg, der pasienten tar mer ansvar for egen dialyse og tilegner seg kunnskap om egen sykdom. Dialysesykepleierne må delegere fra seg noe av det ansvar og arbeidsoppgaver de tradisjonelt har overfor pasienten. Dialysesykepleier og pasienten vil i prinsippet utgjøre et kollegialt fellesskap, hvor kunnskap tilegnes og utvikles gjensidig.
Nøkkelord: dialyse, hemodialyse, sykepleie, omsorg, telemedisin, telesykepleie, tid og rom, nærhet, helsegeografi
Growing an information infrastructure for healthcare based on the development of large-scale Electronic Patient Records
This thesis provides empirical insights about socio-technical interdependencies affecting the making and scaling of an Information Infrastructure (II) for healthcare based on the development of large-scale Electronic Patient Records. The Ph.D. study is an interpretive case study, where the empirical data has been collected from 2012 to 2017. In most developed countries, the pressures from politicians and public in general for better IT solutions have grown enormously, not least within Electronic Patient Record (EPR) systems. Considerable attention has been given to the proposition that the exchange of health information is a critical component to reach the triple aim of (1) better patient experiences through quality and satisfaction; (2) better health outcomes of populations; and (3) reduction of per capita cost of health care. A promising strategy for dealing with the challenges of accessibility, efficiency, and effective sharing of clinical information to support the triple aim is an open health-computing platform approach, exemplified by the openEHR approach in the empirical case.
An open platform approach for computing EPR systems addresses some vital differences from the traditional proprietary systems. Accordingly, the study has payed attention to the vital difference, and analyze the technology and open platform approach to understand the challenges and implications faced by the empirical process. There are two main messages coming out of this Ph.D. study. First, when choosing an open platform approach to establish a regional or national information infrastructure for healthcare, it is important to define it as a process, not a project. Because limiting the realization of a large-scale open platform based infrastructure to the strict timeline of a project may hamper infrastructure growth. Second, realizing an open platform based information infrastructure requires large structural and organizational changes, addressing the need for integrating policy design with infrastructure design
The Implication for Organisation and Governance Through User-Drivern Standardisation of Semantic Interoperable Electronic Patient Record Systems
The increased demand for more effective sharing of healthcare information to support complex patient pathways crossing organisational boundaries calls for semantic interoperable process-oriented Electronic Patient Record (EPR) systems. It follows the need for common standards to ensure that information is understood and interpreted consistently across various contexts.
A considerable body of literature has demonstrated that standardisation within healthcare has proven difficult to achieve. Moreover, standardisation processes have traditionally had a top-down approach, for which little attention has been paid to users’ work practices.
The many failures of standardisation efforts have put focus into alternative standardisation strategies, in which one promising method is promoted through the emerging openEHR approach for standardising the content of the EPRs. A network of voluntary clinical users should have a prominent role in standardisation processes and running the process in a distributed and negotiated manner over the Internet.
In this paper, we seek to give empirical insight regarding the evolving process of developing and implementing a sematic interoperable EPR system based on the openEHR framework, and the implication for organisation and governance addressed by the evolving process. We analyse the case through an information infrastructure perspective, and claim that user-driven standardisation of semantic interoperable EPR systems has to be supported by a multi-level organisational infrastructure, in addition to governance organisations that make decisions and monitor results and performances at different healthcare levels. The organisational and governance infrastructure has to be established simultaneously, but preferably, in advance of new development projects.
Empirically, we have followed the interplay between the developing process of an EPR system based on the openEHR approach and a government-led establishment of an archetype repository
Going Beyond Counting First Authors in Author Co-citation Analysis
The present study examines one of the fundamental aspects of author co-citation analysis (ACA) - the way co-citation
counts are defined. Co-citation counting provides the data on which all subsequent statistical analyses and mappings
are based, and we compare ACA results based on two different types of co-citation counting - the traditional type that
only counts the first one among a cited work's authors on the one hand and a non-traditional type that takes into
account the first 5 authors of a cited work on the other hand. Results indicate that the picture produced through this non-traditional author co-citation counting contains more coherent author groups and is therefore considerably clearer. However, this picture represents fewer specialties in the research field being studied than that produced through the traditional first-author co-citation counting when the same number of top-ranked authors is selected and analyzed. Reasons for these effects are discussed
Generification in change: the complexity of modelling the healthcare domain
In this paper we explore the concept of ”generification” through a Model-Driven Development (MDD) approach. We claim that the concept of generification is in change as the MDD approach, exemplified by the openEHR framework, gives a network of voluntary clinical users a prominent role in the generification process. The customization is no longer ”in the hands” of the vendor, and needs to be formalized for the public healthcare service to take the ownership of the generification process and the standarization of clinical information. Empirically, we have followed the development of a new EPR system adhering to MDD methodology from 2012 to 2016
Generification by Translation: Designing Generic Systems in Context of the Local
While the mechanisms of generification during implementation and use of large-scale systems are well known, this paper extends and analyzes the notion into the design phase of generic systems and provides insight into the associated socio-technical key mechanisms at play. The paper draws on the information infrastructure literature, and emphasizes how generic systems’ designs always face infrastructural challenges and opportunities in the development process. The paper illustrates how a vendor solved the infrastructural challenges by (to a large degree) lending on local practice, translating perspectives, and carefully adjusting their design strategy over time. We argue that our findings have implications for practice because they underscore the malleability of the collaboration process between vendor and users. First, we suggest that designing a generic system calls for a flexible vendor willing to change and adjust the development strategy along with the evolving project. Second, to strengthen the user-developer collaboration, we highly recommend giving the user-participants, at the very early stage of a development project, a basic understanding of software design, and raising their skills in making precise contextual narratives. Third, we emphasize the importance of the project management’s engagement in recruiting clinical personnel and in making it possible for the clinicians to participate in the project. Empirically, the paper presents the initial stages of a large electronic patient record (EPR) development project that has been running from 2012 in the North Norwegian health region and is due to finish in 2016
Variations on the Author
“Variations on the Author” discusses two of Eduardo Coutinho’s recent films (Um Dia na Vida, from 2010, and Últimas Conversas, posthumously released in 2015) and their contribution to the general question of documentary authorship. The director’s filmography is characterized by a consistent yet self-effacing form of authorial self-inscription: Coutinho often features as an interviewer that rather than express opinions propels discourses; an interviewer that is good at listening. This mode of self-inscription characterizes him as an author who is not expressive but who is nonetheless markedly present on the screen. In Um Dia na Vida, however, Coutinho is completely absent form the image, while Últimas Conversas, on the contrary, includes a confessional prologue that moves the director from the margins to the center of his films. This article examines the ways in which these works stand out in the filmography of a director who offers new insights into the notion of cinematic authorship
Appropriate Similarity Measures for Author Cocitation Analysis
We provide a number of new insights into the methodological discussion about author cocitation analysis. We first argue that the use of the Pearson correlation for measuring the similarity between authors’ cocitation profiles is not very satisfactory. We then discuss what kind of similarity measures may be used as an alternative to the Pearson correlation. We consider three similarity measures in particular. One is the well-known cosine. The other two similarity measures have not been used before in the bibliometric literature. Finally, we show by means of an example that our findings have a high practical relevance.information science;Pearson correlation;cosine;similarity measure;author cocitation analysis
Dispelling the Myths Behind First-author Citation Counts
We conducted a full-scale evaluative citation analysis study of scholars in the XML research field to explore just how different from each other author rankings resulting from different citation counting methods actually are, and to demonstrate the capability of emerging data and tools on the Web in supporting more realistic citation counting methods. Our results contest some common arguments for the continued
use of first-author citation counts in the evaluation of scholars, such as high correlations between author rankings by first-author citation counts and other citation
counting methods, and high costs of using more realistic citation counting methods that are not well-supported by the ISI databases. It is argued that increasingly available digital full text research papers make it possible for citation analysis studies to go beyond what the ISI databases have directly supported and to employ more
sophisticated methods
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